Thursday, June 23, 2011
more flowers... :)
thanks Ralph - the flowers are very nice and I really appreciate them and the stuffed bear. It feels like it's been forever since the last infusions but really it's only been a week and a half. Here's to finding out what the progress is in a few weeks!
Friday, June 17, 2011
flowers :)
thanks to my friends at AVID for sending the lovely flowers. They look great and it's a very sweet gesture!
Monday, June 13, 2011
Home after Cycle 2 (of Round 1) and What did I sign myself up for...
So I'm home again (we got home on Sat night, a day and a half ago) and recovering from my second cycle of infusions. Finally got the terminology right ...
1 Round includes:
2 five-day cycles of infusions
and the time off between them (2 weeks then 4).
then a CT scan to determine if the best course of action of another Round.
My mother and sister are here helping me recover before they head back at the end of the week. I was lucky in that Ki was able to spend a couple of evenings and stay over night in the room with me up at the hospital. It's a big deal for me to have their support right now, and I haven't forgotten all of the offers to help drive me up and to bring me back from Portland. These treatments can go up to 6 Rounds... so believe me, I just may call on you for some of that help (rides, chow etc.) so many have graciously offered.
They say cycle 2 is supposed to be somewhat similar, if not a little easier, than cycle 1, as your body more quickly responds. The immune response remembers your reaction last time, and that seems to have been the case for me. It seemed like everything I experienced on cycle 1 came at me about a half or a full day quicker, which meant a pretty quick dive into the side effects (and I still didn't get the sail boat, and apparently someone else gets a Brad Pitt side effect that I don't have either... hmph!).
I seemed to have a slightly quickly recovery time, but Dr Curti felt I was having a strong enough response to spare my body at the same point as the first. Little things like stupid blood pressure, kidney and liver function etc. seem to matter, so here I am with my face about 33% burnt to a flaky yucky crisp (which is about 25.34% less than last time if you're counting). Of course I also wasn't really feeling up to blogging at all this time, hence the 1 week delay.
There were a couple of moments when I seriously felt like it was a bit more than I was expecting to deal with, but knowing that I was doing exactly what I was supposed to be doing, where I was supposed to be doing it really made an impact. I'm certain all of the positive energy being sent my way is helping.
My mom and sister were super amazed at the staff as well. They indicated Dr Curti and the nursing staff were so good that it put their minds at ease for me to be up there. It's a good thing we baked cookies (or rather I asked my mom and sister to...) as a coming back for treatment hello kinda thing :). I'll have to think of something clever to take up next time. Maybe I'll label them "special brownies" and see who takes more than the others... lol This is the Pacific Northwest after all.
I would apologize to all in my company who are seeing their insurance rates go up... it's probably from this treatment... and if so I'm claiming that I didn't write this, rather that my account here was hacked by that classay senator Hot Dog from New Jersey... And if you're uncertain as to IL 2 treatment being correct, than explain why the damn Price is Right theme kept creeping into my head? Mom said we should go to see a show of it once I've kicked this thing out of me, but I don't think Drew Carey really has the same panache as Bob Barker (or those hilariously creepy models they had that kept getting older ... Janice or whatever? Price is Right Zombies is what they were! :) Okay okay... just kidding... I think it would have been really funny if the models stayed up to the same age as Bob Barker...
And to those of you wondering what the Brad Pitt effect was, it's related to the delusions and hallucinations some people experience during treatment. I'm not lucky enough for this to bang around my brain like some others apparently (it's always a possibility, but according to the nurses, if it hasn't done so by the 2nd cycle it probably won't), but one of their patients always knew she had been given enough infusions on her cycles when Brad Pitt would appear in one of the chairs in the room. Same Chair, same Brad etc. Of course I wanted to know if we were talking Mr & Mrs Smith hot or girly long hair pretty Brad. They weren't sure.
I did have a handful of seriously odd vivid dreams. The last was reverse black and white (similar to Frank Miller's "Sin City") and the hilarious thing I remember was going into a seedy part of town for pizza and pasta with meat balls... and everything was black and white but the food (hey last time it was doughnuts in a cartoonish dreamscape of the Paris casino in Las Vegas.) Probably was a sensory memory from the amazing smelling pizza leftovers Ki had from my mom and sister's Thursday night dinner.
And thank you to the brave souls who came to visit during the week (3 friends from Portland and a couple of Ki's best friends from medical school) and a special note for M smuggling Ki a couple of brews after his stressful week. I think it was almost as hard for him to not be there as it was for me to be getting the spa treatment (we'll see if that term sticks... my skin hasn't regenerated quite yet, but we're working the Aveeno face mask that Ki developed already).
Of course it goes without saying... the insane Chewbacca stuffed thing was hilarious and all the nursing staff thought it was quite rad (very fun bday gift Kyle!).
One more thing - major congratulations to my man - Ki passed his medical boards and has no more testing to take before he graduates next year! I'm super proud of him and how he's managed to do so well with the tough things being handed to him.
1 Round includes:
2 five-day cycles of infusions
and the time off between them (2 weeks then 4).
then a CT scan to determine if the best course of action of another Round.
My mother and sister are here helping me recover before they head back at the end of the week. I was lucky in that Ki was able to spend a couple of evenings and stay over night in the room with me up at the hospital. It's a big deal for me to have their support right now, and I haven't forgotten all of the offers to help drive me up and to bring me back from Portland. These treatments can go up to 6 Rounds... so believe me, I just may call on you for some of that help (rides, chow etc.) so many have graciously offered.
They say cycle 2 is supposed to be somewhat similar, if not a little easier, than cycle 1, as your body more quickly responds. The immune response remembers your reaction last time, and that seems to have been the case for me. It seemed like everything I experienced on cycle 1 came at me about a half or a full day quicker, which meant a pretty quick dive into the side effects (and I still didn't get the sail boat, and apparently someone else gets a Brad Pitt side effect that I don't have either... hmph!).
I seemed to have a slightly quickly recovery time, but Dr Curti felt I was having a strong enough response to spare my body at the same point as the first. Little things like stupid blood pressure, kidney and liver function etc. seem to matter, so here I am with my face about 33% burnt to a flaky yucky crisp (which is about 25.34% less than last time if you're counting). Of course I also wasn't really feeling up to blogging at all this time, hence the 1 week delay.
There were a couple of moments when I seriously felt like it was a bit more than I was expecting to deal with, but knowing that I was doing exactly what I was supposed to be doing, where I was supposed to be doing it really made an impact. I'm certain all of the positive energy being sent my way is helping.
My mom and sister were super amazed at the staff as well. They indicated Dr Curti and the nursing staff were so good that it put their minds at ease for me to be up there. It's a good thing we baked cookies (or rather I asked my mom and sister to...) as a coming back for treatment hello kinda thing :). I'll have to think of something clever to take up next time. Maybe I'll label them "special brownies" and see who takes more than the others... lol This is the Pacific Northwest after all.
I would apologize to all in my company who are seeing their insurance rates go up... it's probably from this treatment... and if so I'm claiming that I didn't write this, rather that my account here was hacked by that classay senator Hot Dog from New Jersey... And if you're uncertain as to IL 2 treatment being correct, than explain why the damn Price is Right theme kept creeping into my head? Mom said we should go to see a show of it once I've kicked this thing out of me, but I don't think Drew Carey really has the same panache as Bob Barker (or those hilariously creepy models they had that kept getting older ... Janice or whatever? Price is Right Zombies is what they were! :) Okay okay... just kidding... I think it would have been really funny if the models stayed up to the same age as Bob Barker...
And to those of you wondering what the Brad Pitt effect was, it's related to the delusions and hallucinations some people experience during treatment. I'm not lucky enough for this to bang around my brain like some others apparently (it's always a possibility, but according to the nurses, if it hasn't done so by the 2nd cycle it probably won't), but one of their patients always knew she had been given enough infusions on her cycles when Brad Pitt would appear in one of the chairs in the room. Same Chair, same Brad etc. Of course I wanted to know if we were talking Mr & Mrs Smith hot or girly long hair pretty Brad. They weren't sure.
I did have a handful of seriously odd vivid dreams. The last was reverse black and white (similar to Frank Miller's "Sin City") and the hilarious thing I remember was going into a seedy part of town for pizza and pasta with meat balls... and everything was black and white but the food (hey last time it was doughnuts in a cartoonish dreamscape of the Paris casino in Las Vegas.) Probably was a sensory memory from the amazing smelling pizza leftovers Ki had from my mom and sister's Thursday night dinner.
And thank you to the brave souls who came to visit during the week (3 friends from Portland and a couple of Ki's best friends from medical school) and a special note for M smuggling Ki a couple of brews after his stressful week. I think it was almost as hard for him to not be there as it was for me to be getting the spa treatment (we'll see if that term sticks... my skin hasn't regenerated quite yet, but we're working the Aveeno face mask that Ki developed already).
Of course it goes without saying... the insane Chewbacca stuffed thing was hilarious and all the nursing staff thought it was quite rad (very fun bday gift Kyle!).
One more thing - major congratulations to my man - Ki passed his medical boards and has no more testing to take before he graduates next year! I'm super proud of him and how he's managed to do so well with the tough things being handed to him.
Monday, June 6, 2011
Time for the 2nd Cycle of Infusions - or Happy Damn Birthday!
Now to those of you who may feel I'm not absolutely thrilled to celebrate my illustrious 43rd birthday on the day I check in to start the 2nd week of Interleukin 2 infusions... realize it's all a matter of perspective.
There really is no other way to view this than for me to be super grateful to be on my current path, getting the best treatment possible, working with such great folks who have given me so much support and reassurance to not be worried about the office, and my amazing family and friends who have been taking care of everything I need and who keep expressing the willingness to do so for the coming months.
Plus it's kind of funny to see the attempt to hide to horrified expressions on the various hospital folks who notice it's my birthday when they're asking me for my information :)
In the immortal words of Carrie Fisher ... it's not over yet! God I love to spew random Star Wars quotes (here's a good one for an iffy first date... "You came here in that thing? You're braver than I thought...")
Man I do have to say... ouch to getting a main line catheter stuck into your right shoulder! Although this time Dr Mann (what a great name) did a better job than Dr Mc Beardie did last time (no complaints as he didn't deflate my lung!). It's just not a place where you should ever feel ANYTHING. That's what our dermal layer is for... touching. Not the stuff on the inside man... (or rather ... Dr Mann... lol). Dang it - I should have acted all Cheech n Chong on him while he was giving me that lovely sensation. Yo Dr Man - it's Dave, open up, I got the stuff! heh
My mom and sister are here for this week, and let me tell you... if you're ever fortunate to travel anywhere with the 2 of them make dang sure your car has room for a lot of groceries. You'll have to stop and hunt for the "special" popcicles (you know... David Lee couldn't eat brown M&M's cause there wasn't a surprise in them - Liz has her own special popcicle flavors that feature no surprise :) Oh and hotel pull out beds are just as comfy as they ever were... We drove up last night and they're staying in a residence inn just down the road from the hospital that gives a discount to people with family being treated.
I asked them to make some of my mom's yummy chocolate chip cookies to bring in for the staff in the cancer ward, and the came out great. Love my mom and sister! (that's more of a statement minus the who, or rather has an implied subject in place of the missing 'I,' rather than an imperative or command form usage indicating all who read this should indeed love my mom and sister - although that's not a bad idea.)
My nurse managed to secure a bed extension and a support mat for the bed (we found out about the extension on Thursday of the last treatment - nice timing). Apparently they run in short supply so it's a good thing I asked early.
Well wish me luck and know that I'm excited to get my second cycle of IL2 pumping into me. I mean hell, I managed to drop 10 lbs, get what resembles a chemical peel on my face and oh yeah... continue killing this stupid mystery melanoma bits that's in my lungs and lymph node.
And everyone enjoy the good weather that's starting - I would like to get out into it, but that wouldn't be the best advice at the moment :).
Until later,
Doss
There really is no other way to view this than for me to be super grateful to be on my current path, getting the best treatment possible, working with such great folks who have given me so much support and reassurance to not be worried about the office, and my amazing family and friends who have been taking care of everything I need and who keep expressing the willingness to do so for the coming months.
Plus it's kind of funny to see the attempt to hide to horrified expressions on the various hospital folks who notice it's my birthday when they're asking me for my information :)
In the immortal words of Carrie Fisher ... it's not over yet! God I love to spew random Star Wars quotes (here's a good one for an iffy first date... "You came here in that thing? You're braver than I thought...")
Man I do have to say... ouch to getting a main line catheter stuck into your right shoulder! Although this time Dr Mann (what a great name) did a better job than Dr Mc Beardie did last time (no complaints as he didn't deflate my lung!). It's just not a place where you should ever feel ANYTHING. That's what our dermal layer is for... touching. Not the stuff on the inside man... (or rather ... Dr Mann... lol). Dang it - I should have acted all Cheech n Chong on him while he was giving me that lovely sensation. Yo Dr Man - it's Dave, open up, I got the stuff! heh
My mom and sister are here for this week, and let me tell you... if you're ever fortunate to travel anywhere with the 2 of them make dang sure your car has room for a lot of groceries. You'll have to stop and hunt for the "special" popcicles (you know... David Lee couldn't eat brown M&M's cause there wasn't a surprise in them - Liz has her own special popcicle flavors that feature no surprise :) Oh and hotel pull out beds are just as comfy as they ever were... We drove up last night and they're staying in a residence inn just down the road from the hospital that gives a discount to people with family being treated.
I asked them to make some of my mom's yummy chocolate chip cookies to bring in for the staff in the cancer ward, and the came out great. Love my mom and sister! (that's more of a statement minus the who, or rather has an implied subject in place of the missing 'I,' rather than an imperative or command form usage indicating all who read this should indeed love my mom and sister - although that's not a bad idea.)
My nurse managed to secure a bed extension and a support mat for the bed (we found out about the extension on Thursday of the last treatment - nice timing). Apparently they run in short supply so it's a good thing I asked early.
Well wish me luck and know that I'm excited to get my second cycle of IL2 pumping into me. I mean hell, I managed to drop 10 lbs, get what resembles a chemical peel on my face and oh yeah... continue killing this stupid mystery melanoma bits that's in my lungs and lymph node.
And everyone enjoy the good weather that's starting - I would like to get out into it, but that wouldn't be the best advice at the moment :).
Until later,
Doss
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